This mixed-method study aimed to contribute knowledge to the ongoing care of children suffering from MIS-C. The main findings from audits of clinical records were that boys were more frequently diagnosed with MIS-C, and the RNs observed that children had difficulties related to circulation (fever and swelling), nutrition (great thirst and loss of appetite), pain, and psychosocial situations. Furthermore, the main findings from the interviews included RNs’ experiences of frustration about the uncertainty of care and children’s illbeing. Experiences also included several unavoidable procedures that were hard for the children and challenging for the RNs, such as blood sampling and venous access, measuring blood pressure and weight as well as drug administration.
RNs caring for children suffering from MIS-C had to cope with the uncertainty of care, which created frustration and major stress. When a new disease arises, a major workload is placed on RNs. In a previously described study concerning Kawasaki disease, similar to MIS-C, RNs played an important role in controlling symptoms and vital parameters (18). It is likely that the RNs’ perceived responsibility for the children’s symptoms and vital parameters was a major factor correlating to stress. In a previous report from RNs working in South Korea during the Middle East Respiratory Syndrome outbreak, RNs experienced unclear and frequently changing guidelines as stress-inducing (19). Several RNs in the present study described the situation as stressful on multiple levels: stress over the new disease with a severely ill, previously healthy child, stress over workload and stress over not having a concrete plan. This finding is in line with a study in which nurses reported stress related to a lack of evidence-based treatment (20). A turning point with the MIS-C treatment and care at our hospital came when paediatricians with a specialty in rheumatology assumed primary responsibility, a clear plan and multidisciplinary guideline were made and it was decided that these patients were prioritised with central venous line access early in their treatment process.
As in previous studies, the children in this study were primarily boys, and the average age was around 9 years (21, 22). The hospitalisation times for children with MIS-C were longer, 5–9 days (51%), compared to the other patients at the Children’s Hospital, which was approximately 3 days. In our cohort, 8.5% needed intensive care. In a previous systematic review, significantly higher numbers of children were reported (73%) needing intensive care (3). This could be explained by the very advanced care that was provided at the inpatient units at our Children’s Hospital, also corresponding to nurses’ descriptions in the interviews that the care provided was equivalent to that of intensive care as they mentioned they were “stationed” in the patient room.
Two of the major difficulties identified in nursing status from the clinical records and interviews in our study were children’s circulation and pain. Swelling and oedema were often present, and pain was described as originating from the skin, abdomen and head. However, most often, pain was described as originating from the whole body, resulting in difficulties in identifying and locating it. In a recent study, neck pain and retropharyngeal oedema were described as associated with MIS-C (23); nevertheless, in our study, neck pain was not specifically described. In other studies, abdominal pain and headache were reported (7, 24, 25), which correlates with what the RNs in our study described. Notably, MIS-C research seldom reports a pain strategy plan; one could argue that this might depend on the challenge of locating the pain, as well as the great variation of pain experiences.
Not only did pain occur due to the illness itself, but it also occurred in relation to unavoidable nursing procedures, such as venous catheter insertion or measuring blood pressure. One major task for nurses is to balance and prioritise these procedures. In a study about ethical issues in paediatric care, painful procedures were found to be ethically difficult (26). It is reasonable to assume that nurses in our study found it ethically difficult when they knew that they had to expose children to pain by performing unavoidable procedures, especially when the children did not cooperate. To perform painful/unpleasant procedures on children who resist such treatment has also been found to be morally distressing in paediatric care (27). Further research could focus on the ethical aspects of caring for children suffering from a rather unknown disease such as MIS-C. Future research could also include the perspectives of paediatricians who care for these children. The RNs in our study described paediatricians heavy workload and stress, which resulted in late rounds and delayed treatment decisions, which would likely expose them to ethical questions and moral distress.
Moreover, the analysis in our study revealed that nearly half of the patients were sad and experienced fear in connection with nursing procedures. This finding is consistent with a recent systematic review and meta-analysis related to the fear of needles (28). It was found that prevalence estimates for needle fear ranged from 20–50% in adolescents (28). Sometimes, it is not easy to determine whether a child is crying out of pain, fear or both. When caring for children suffering from an unknown disease like MIS-C, it will most likely be important to take numerous blood tests frequently. In these cases, we would argue for the early insertion of a central venous catheter to reduce both pain and fear, provided that it is medically safe.
Another MIS-C remarkable nursing status was fever. Three-quarters of the children in our cohort suffered from fever for more than 5 days, which is in line with previous research (3). Fever interestingly often has an impact on other symptoms as well. According to our experience, in this study high fever could accompany pain from the skin. Research has found that children with severe symptoms of MIS-C often suffer from both fever and pain (24). Therefore, it is crucially important for HCPs to reduce fever to decrease different kinds of pain. Moreover, it is important to reduce fever to increase children’s appetites. In our cohort, almost 80% of the children suffered from a loss of appetite, which also probably can be closely linked to the gastrointestinal symptoms suffered by many of the children (29).
A further challenge that the nurses described was the combination of children’s thirst and fluid restrictions. This was combined with a situation in which parents were present in the children’s rooms at all times and were therefore the ones registering fluid intake. Most parents managed it perfectly, but in some cases, it was challenging for the nurses to know whether the fluid intake was adequately registered, which created uncertainty among the nurses. Previous research has shown that parents play a very important role in paediatric care and that forming a partnership of trust is key (30). It is essential that parents have the possibility to be “only” parents while assisting in general care actions, such as fluid intake registration. Research has shown that parents want to take part in their children’s care but according to their own preferences (31). We argue that it is important to have a family-centred approach and thereby strive to understand what is best for each individual child and parent from their perspective, protect the parents’ autonomy and promote parents as active partners while confirming their experiences. However, the challenge remains if there is a heavy workload on nurses and parents must assist in general care activities even when they do not want or have sufficient resources to cope with it.
To summarize, it is clear that HCPs face multiple challenges when caring for children affected by MIS-C. In order to deal with these challenges and contribute to knowledge to all HCPs we have put together suggested recommendations for care based on nursing status and observations found in this study. These recommendations are listed below (Table 4).
Table 4
Nursing status, observations and recommendations of care related to children suffering from MIS-C.
Nursing status
|
Observations
|
Recommendations of care
|
- Activity
|
Fatigue
|
Coordinate care to facilitate rest
|
- Breathing
|
Decreased saturation
High respiration rate
|
Oxygen when needed, antipyretics when high respiration rate in connection to fever
|
- Circulation
|
High fever, swelling
|
Add cold blankets to antipyretics
Strict monitoring of fluid intake and elimination
|
- Coordination/
- communication
|
Heavy workload
Poor communication
Agitated children
|
Decrease patient–nurse ratio during the first critical phase
The interprofessional team is very important, looping in at the end of the day to evaluate team work
|
- Drug administration
|
Time consuming preparation and administration
|
If not possible to decrease patient–nurse ratio, add a pharmacist to the team
|
- Elimination
|
Control challenges
|
Controlling elimination is very important; if the children and parents cannot document quantities, there must be a clear plan as to who is responsible for this
|
- Nutrition
|
Loss of appetite
Great thirst
|
Nutrition plan, together with a dietician. Optimise food and fluids within the confines of the restrictions
|
- Pain
|
Difficult to locate
|
Act to have a pain strategy plan that includes clearly addressing multiple pain locations as well as monitoring and regular re-evaluation
|
- Procedures
|
Traumatic
Repetitious
|
Early central venous line access
Use distraction methods and child-adapted information
|
- Psychosocial
|
Anxiety
Parents in despair
|
Family-centred care approach; social worker should be invited in the care of the family
|
Skin/tissue
- Access
|
Burning, rashes,
collapsed veins
|
Cold blankets
Central venous line
|
- Sleep
|
Disturbed due to management of symptoms and treatment
|
Coordinate procedures and drug administrations to minimise the number of times the child’s room is entered during the night
|
Strengths and limitations
Having a mixed-method design may create valuable insights, and the different approaches enable the creation of new knowledge (32). When conducting mixed-method studies, it can be challenging to combine the paradigms of qualitative and quantitative nursing research (33). However, we would argue that this is positive in our study since the results from the quantitative audits of clinical nursing records and qualitative interview data strengthen each other. Focus group interviews are valuable when it comes to describing people’s experiences and attitudes (34). The objective of focus group interviews is to receive high-quality data in a social context where the participants can reflect on their own views in relation to others (14); we believed this goal was met. To ensure trustworthiness data analysis was performed using researcher triangulation and quotes are used to illustrate the findings.
A possible limitation is the data obtained via clinical nursing records. It may be, for example, that different RNs interpreted a child’s symptoms differently and therefore documented it differently. As described in the discussion, young children are sometimes difficult to interpret, which may have affected the results. Another limitation is the number of audits performed. A greater number would have strengthened the results, but due to the low number of publications related to the nursing experiences of children suffering from MIS-C, we decided to stop data collection in favour of disseminating our experience sooner.